To:
UK government and the responsible ethics, funding, and approval committees

STOP GRADED EXERCISE THERAPY TRIALS FOR ME/CFS

We, the undersigned, call on the UK Government and the responsible ethics, funding and approval committees, to stop trials of graded exercise therapy (GET) in children and adults with myalgic encephalomyelitis.

Why is this important?

Hundreds of patients have reported harm — some becoming housebound or bedbound, indefinitely — from graded exercise therapy (GET). Objective criticism from scientists and journalists have argued that there is no correlation between participation in GET and recovery.

Yet public resources continue to fund trials such as MAGENTA, a UK trial of graded exercise therapy in children ages 8-17. After the feasibility study on 100 children is completed, MAGENTA will likely expand to a larger trial, with more young patients recruited.

MAGENTA’s public documents, including the participant-information sheets given to prospective patients and their parents/carers in the feasibility trial do not convey the magnitude of the harm reported by patients. A document addressed to parents reads “We have used both treatments [GET and activity management] in our service and we are not aware of side effects. Studies in adults have also not shown that there are any side effects.” Therefore, the children in MAGENTA and those responsible for their well-being may not have given adequately informed consent.

The rationale for performing additional GET studies in ME/CFS such as MAGENTA rest on the shoulders of the fundamentally-flawed PACE trial. PACE’s flaws are so well-known and so profound that over 40 scientists and doctors, including pediatricians, have signed an open letter stating that PACE’s “major flaws... have raised serious concerns about the validity, reliability and integrity of the findings”. Thousands have demanded retraction of PACE’s “misleading” analyses and 24 ME/CFS charities in 14 countries have demanded that its data be released for reanalysis: PACE is no basis for a trial in children or adults.

Please sign now, and share this petition widely. Join with us to protect our community from research that ignores the biological realities of ME/CFS and promotes a potentially harmful therapy.

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Reasons for signing

This kind of treatment can be extremely harmful. The fact that children are part of these trials without their parents being fully informed of the risks horrifies me! As someone who has lived with ME for 26 years (since my early teens) I do not want to see anyone risking their chance of recovery on ill-advised "therapy" based on flawed trials. Please stop this now!

Nikki P.
2018-10-18 12:54:10 -0400

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I signed this petition because I was put on a graded exercise programme .telling me it will improve the ME and help me to recoverand it will. build up my energy levels . I did as I was advised because I believed I would get better. Infact it had severly debilitaed me further abd I now have severe muscle wastage and a rehabilitation team tryingvto rebuild my leg muscles .

Anita S.
2018-09-19 15:18:12 -0400

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Psychiatrists have been trying for many years to make ME their precinct, and this hampers proper research into the causes of the illness.